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Knitting Equals Pleasure, Despite ME/CFS
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ME/CFS is a mast cell disorder (hypothesis)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 12, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    Dopamine, norepinephrine, and epinephrine can all be tested. It can be measured in urine to show daily output, or in blood serum to show a snapshot of what is happening at a given moment (like when going from sitting to standing), or in blood platelets to show long term levels over the past three months.

    I think when it comes to these neurotransmitters, testing is a lot better than guessing based on symptoms. As Sherlock said, there are simply too many things which can cause identical symptoms.

    In my case low (and another that I know of), low norepinephrine levels seem to cause orthostatic intolerance (and accompanying cognitive problems) of the more NMH variety. My blood platelet norepinephrine levels are quite low, and taking a norepinephrine reuptake inhibitor makes the OI go away for the most part. Norepinephrine is known to regulate blood pressure, but without testing it it's hard to guess if it's responsible or one of a dozen different neurotransmitters or hormones.
  2. roxie60

    roxie60 Senior Member

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    I've had 12 of my neurotransmitters tested in the last year and 90% were low to extremely low. Trying to support via supplements. My ability to goto sleep now at a 'normal' time has improved since going on estridiol but still not refreshed in the AM, maybe after years of major sleep dep it may take awhile to get back to refreshing sleep (pre-2006). However now getting sores on skin, not sure if the estrogen is the cause but getting scars where patches were against skin.
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Yes thats the case, The Spitfire, healing leaky its a lot more complicated that it seems. We are talking about a disorder so severe that actually originates autoimmunity and its involved in AUTISM. Curing it its hard because of many other conditions or parameters that worsen or maintain the state of inflammed and weakened intestinal epithelium. This my favourite summary on leaky gut, it explains why its so hard to cure. Apart from the difficulty of the disorder itself there are limiting factors such as the well known glutathione depletion that will make healing it alltogether impossible. http://www.melodiagrill.com/uploads/2/9/2/8/2928807/leakygut.pdf
    sensing progress and Jarod like this.
  4. merylg

    merylg Senior Member

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    sensing progress and camas like this.
  5. sensing progress

    sensing progress Senior Member

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    Why is that? Can you please elaborate a bit.
  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Actually it makes you intolerant to most of foods. If we were allergic to so many foods we would be in the hospital or in a graveyard. Food intolerances are not to be confused with allergies. For instance, I have an IgG intolerance for wheat, but not an IgE allergy. Food intolerances are sneaky and they sabotage your health in the shadows, creating low-grade, chronic inflammation in the gut. For me, touching/slightly rubbing my belly tells me how my inflammation goes. There is a dull pain there, similar to when you get a small wound and it is cicatrizing. It is especially notorious (no need to touch my belly) after eating inflammatory foods such as tomato sauce or sometimes in the morning (after an inflammatory dinner I would say)..

    I am thinking that it would be a good idea adding glutathione reduced to my future leaky gut program, I know that at least one other user her had success with that and other things.
    sensing progress and Valentijn like this.
  7. AbbyDear

    AbbyDear

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    i have not an expert about the mast cell disorder, but for me it seems to be something more than IgE, IgG, and even histamine. I feel there is something (immune related) they haven't found yet, or fingured out yet. I am extremely intolerant to most food, chemical, and some environmental. The IgG blood tests do not get everything, for me. I get similar gut feelings also.
    camas likes this.
  8. camas

    camas Senior Member

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    MCAS and leaky gut are probably separate issues, although people with MCAS do have many food intolerances and gut issues.

    Dr. Molderings in Germany has found a blizzard of mutations (Dr. Afrin's term) on the Kit gene among his MCAS patients. When Kit is turned on, so is mast cell activation. What is causing all these mutuations is not yet known. Mast cells release up to 200 mediators including histamine, prostaglandins, heparin, etc.
    Thinktank and AbbyDear like this.
  9. Thinktank

    Thinktank Senior Member

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    camas, interesting find. I want to be checked for the KIT-mutation so i'll try to contact Dr. Molderings. I've to be in Germany next month anyway.

    I'm trying to find a list of the inflammatory mediators released by mast cells without much luck to have some more testing done. I know of the histamine, n-methylhistamine, heparin, chromo A, PGE2 etc. but there are many more.
    A lot of MCAS sufferers are too fixated on just histamine and not mast cell stabilization while other inflammatory mediators might be causing even more damage.
    camas likes this.
  10. camas

    camas Senior Member

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    Hi Thinktank,

    Brace yourself. This is the list of mast cell mediators Dr. Afrin points to in one of his papers. I'll attach his most recent paper again in case anyone has missed it. I believe he lists some additional clinical tests you can have towards the end in the tabled section. But as he says testing can sometimes be normal, so he also goes by symptoms and the person's response to treatment. If it looks like a duck, and quacks like a duck...

    P.S. Hope your tapering is going well!

    Attached Files:

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  11. Thinktank

    Thinktank Senior Member

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    Holy cow, that's quite the list.... Do you perhaps know which ones are the main bad guys and cause most harm? Except from histamine PgE2 etc that are listed in Afrin's paper.

    I'm already off the prednisone :) The doc wanted me to taper off slowly in a 3 to 4 months period but i was having so many negative side effects from it i tapered off in 3 weeks. No adrenal crash so far i know and my libido is back like usual. I'm going to have DHEA-s and cortisol tested tomorrow to be sure.

    The pred has triggered something else in my body, some docs believe it's lyme's disease which i tested positive for on IgG. I will have more lyme's testing next month with Dr. KDM.

    I got most MCAS symptoms under control with diet, avoiding triggers and the use of the benzodiazepines xanax and clonazepam which work as good or better than H1 and H2 anti-histamines. I have to focus on mast cell stabilization and avoiding degranulation but first some more testing....

    I've also received some genetic results which add more burden to the puzzle to solve.
  12. camas

    camas Senior Member

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    Thinktank

    Yeah, that's quite the list. I have no idea which mediators cause the most harm. I think they test histamine, prostaglandins, etc. because that's about all they can test for in a clinical setting.

    Good to hear you got off the prednisone and are feeling better on the mast cell protocol. I wish you luck with your continued testing. I hope they can come up with something definitive!
  13. triffid113

    triffid113 Day of the Square Peg

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    Oh I don't know where I told tthis story but prolly not in this thread and I see you are saying leaky gut is impossible to heal and yet I healed it. I was tested allergic to wheat long time ago with all my other allergy tests and thought nothing of it as I never noticed any symptoms (I expected sneezing of course as that is caused by my other allergies). I worked a lot of overtime for looooong periods (year long at a stretch) and got run down and started to notice that when I ate wheat I would immediately get joint pain and rather severe depression. I went on a celiac diet for 2 years but due to not eating enough starch I became 'brittle hypoglycemic' - I could not walk across the street to the next building for a meeting w/o getting a low blood sugar attack. Also I became hypersensitive to the merest shred of wheat - like things made in a factory that had wheat on the assembly line would cause immediate deep depression, etc. SO I decided that these frequent low blood sugar attacks were beating up my internal organs worse than eating wheat and I decided to eat wheat again to de-sensitize myself and instead I decided to pursue taking zinc to "close the large pores in my intestines letting me absorb undigested wheat (which is nasty to the brain especially)". I got the idea because studies were just out on how zinc "closes the crevices in the nose through which cold germs enter" and I reasoned that intestines are skin too, as are blood vessels. I asked my eye doc and he confirmed that zinc reduces macular degeneration (keeps blood vessels from leaking!). So there were clues to this everywhere but I looked very hard and managed to unearth then (15 years ago) 2 studies which confirmed it. Basically high dose zinc took care of my wheat allergy. I was also conscious that I had low HCL and it takes zinc to make HCL, also important to fully digesting that wheat.

    So I also started to take Olive Leaf Extract 1g/day to kill pathogens that HCL would have killed. I have repeated problems fighting to keep some level of HCL and prevent leaky gut because my allergies use up copious amounts of zinc. I also supplement copper as you should not take zinc w/o copper.

    that's it. And I go from a little less HCL to pretty much enough, but never so bad as I was
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  14. Mindy

    Mindy

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    @xchocoholic - hi, I was reading this post and wonder what "oi" stands for. I also have parasites and h. pylori and now have histamine issues and have just developed MCS. Lost a ton of weight, difficulty breathing, struggling. Did you heal your gut and eradicate the bugs? If so, did that help the histamine issue? thanks
  15. jeffrez

    jeffrez Senior Member

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    OI = orthostatic intolerance. Basically means you get autonomic dysregulation symptoms when you stand up.
  16. Radio

    Radio *****

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    We can buy celery seeds cheap and it will have the fatty acids in the seed , making it highly bioavailable for absorption in the gut.

    Luteolin Food Sources by energy

    The following table lists all foods in the USDA database that contain luteolin. To match other tables, I have formatted the data to show values per 100 calories.

    Long_Desc Luteolin (mg) 100 Kcal Serve(g) Vitamin C (mg) PRAL Score Iron (mg) GoutPal Index
    Spices, celery seed 194.49 26 4 -9 11 -6.6
    Radicchio, raw 165.13 435 35 -21 2 23.5
    Thyme, fresh 44.80 99 159 -15 17 42.3
    Peppers, sweet, green, raw 23.55 500 402 -15 2 144.4
    Peppermint, fresh 18.09 143 45 -18 7 17.5
    Peppers, serrano, raw 12.94 313 140 -15 3 54.4
    Peppers, hot chili, green, raw 9.68 250 606 -13 3 207.9
    Chicory greens, raw 9.04 435 104 -36 4 52.9
    Juice, lemon, canned or bottled 8.71 476 118 -9 1 48.1
    Spices, parsley, dried 6.76 34 43 -18 8 15.2
    Celery, raw 6.56 625 19 -31 1 27.1
    Lemons, raw, without peel 6.55 345 183 -8 2 66.1
    Pumpkin, raw 6.27 385 35 -22 3 22.7
    Lettuce, red leaf, raw 5.94 625 23 -19 8 14.9
    Artichokes, (globe or french), raw 4.89 213 25 -11 3 12.7
    Kohlrabi, raw 4.81 370 230 -21 1 89.0
    Peppers, jalapeno, raw 4.62 345 409 -15 1 146.3
    Peppers, sweet, yellow, raw 3.78 370 680 -13 2 234.9
    Blueberries, frozen, unsweetened 3.53 196 5 -1 0 3.9
    Spinach, raw 3.22 435 122 -51 12 57.7
    Parsley, fresh 3.03 278 369 -31 17 122.2
    Olives, ripe, canned (small-extra large) 2.43 87 1 -1 3 -1.7
    Broccoli, raw 2.35 294 262 -12 2 93.8
    Peppers, sweet, red, raw 1.97 323 412 -11 1 144.5
    Melons, cantaloupe, raw 1.88 294 108 -15 1 45.7
    Lettuce, green leaf, raw 1.73 667 61 -21 6 31.2
    Watermelon, raw 1.53 333 27 -7 1 14.8
    Rosemary, fresh 1.53 76 17 -13 5 6.9
    Grapefruit, raw, pink and red, all areas 1.43 238 74 -6 0 29.7
    Oranges, raw, navels 1.43 204 121 -6 0 45.0
    Brussels sprouts, cooked, boiled, drained, without salt 1.39 278 172 -12 3 62.5
    Cauliflower, frozen, cooked, boiled, drained, without salt 1.26 526 165 -9 2 62.2
    Kiwifruit, green, raw 1.21 164 152 -9 1 56.3
    Cauliflower, frozen, unprepared 1.21 417 203 -10 2 74.4
    Cauliflower, cooked, boiled, drained, without salt 1.17 435 193 -6 1 69.9
    Beets, raw 0.86 233 11 -12 2 10.3
    Brussels sprouts, raw 0.77 233 198 -12 3 70.5
    Cabbage, chinese (pak-choi), raw 0.69 769 346 -39 6 135.7
    Cabbage, savoy, raw 0.67 370 115 -13 1 46.8
    Peas, green, frozen, cooked, boiled, drained, without salt 0.51 128 13 3 2 2.0
    Chives, raw 0.50 333 194 -16 5 69.9
    Lotus root, raw 0.49 135 59 -11 2 24.8
    Beans, snap, green, raw 0.42 323 39 -11 3 17.9
    Oranges, raw, all commercial varieties 0.40 213 113 -8 0 43.5
    Cabbage, raw 0.40 400 146 -11 2 56.3
    Olives, pickled, canned or bottled, green 0.39 69 0 -1 0 0.7
    Cauliflower, raw 0.36 400 193 -18 2 75.2
    Blueberries, cultivated (highbush), raw 0.35 175 17 -2 0 7.8
    Cabbage, red, raw 0.32 323 184 -14 3 68.6
    Lettuce, cos or romaine, raw 0.29 588 24 -25 6 19.9
    Carrots, raw 0.27 244 14 -14 1 13.4
    Sweet potato leaves, raw 0.26 238 26 -22 2 19.6
    Collards, raw 0.25 313 110 -18 1 47.3
    Apples, raw, with skin 0.23 192 9 -4 0 6.5
    Lettuce, iceberg (includes crisphead types), raw 0.21 714 20 -16 3 18.4
    Watercress, raw 0.18 909 391 -52 2 163.2
    Cabbage, chinese (pak-choi), cooked, boiled, drained, without salt 0.17 833 217 -62 9 102.0
    Cabbage, chinese (pe-tsai), raw 0.13 625 169 -29 2 75.0
    Tomatoes, red, ripe, canned, packed in tomato juice 0.12 588 55 -21 6 28.2
    Cabbage, cooked, boiled, drained, without salt 0.09 435 163 -14 1 65.0
    Onions, young green, tops only 0.07 370 50 -11 2 23.8
    Alcoholic beverage, wine, table, red, Cabernet Franc 0.07 120 0 0 0 1.2
    Strawberries, frozen, unsweetened 0.06 286 118 -8 2 43.9
    Tomatoes, red, ripe, cooked 0.06 556 127 -19 4 53.2
    Juice, Cranberry cocktail, bottled 0.06 185 78 -1 0 28.1
    Gourd, dishcloth (towelgourd), raw 0.05 500 60 -9 2 27.4
    Onions, raw 0.05 250 19 -5 1 10.6
    Alcoholic beverage, wine, table, red, Cabernet Sauvignon 0.05 120 0 0 0 1.2
    Taro leaves, raw 0.05 238 124 -27 5 51.4
    Alcoholic beverage, wine, table, red 0.05 118 0 -3 1 1.9
    Papayas, raw 0.05 233 142 -9 1 53.6
    Yardlong bean, cooked, boiled, drained, without salt 0.04 213 34 -9 2 16.0
    Mangos, raw 0.03 167 61 -5 0 24.1
    Onions, sweet, raw 0.03 313 15 -5 1 9.7
    Sweet potato, raw, unprepared 0.02 116 3 -7 1 4.6
    Apples, raw, without skin 0.02 208 8 -3 0 6.3
    Pineapple, raw, all varieties 0.02 200 96 -4 1 35.4
    Apples, Red Delicious, raw. with skin 0.02 169 0 -3 0 3.0
    Juice, grape, canned or bottled, unsweetened, without added ascorbic acid 0.02 167 0 -3 0 2.8
    Apples, Fuji, raw, with skin 0.02 159 0 -3 0 2.9
    Oil, olive, salad or cooking 0.01 11 0 0 0 0.0
    Cranberry sauce, canned, sweetened 0.01 66 1 0 0 1.1
    Cranberries, dried, sweetened 0.01 32 0 0 0 0.3
    Plums, dried (prunes), uncooked 0.00 42 0 -6 0 2.9
    We can buy celery seed cheap and it will have the fatty acids in the seed , making it highly bioavailable for absorption in the gut.
    camas likes this.

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